The Fight Continues

After 30 years of dealing with HIV and AIDS, Delaware has a long way to go in preventing the
disease.

by Scott Pruden

(page 2 of 3)

AIDS emerged in 1981 in major metropolitan areas with concentrations of gay men. Because of the state’s proximity to major urban areas, Delaware had 30 cases of its own in 1986. Nurse Arlene Bincsik, who was working at what was then Christiana Hospital, joined several doctors who had been seeing AIDS patients privately, but in a multidisciplinary setting that provided easy access to a spectrum of care. “The point was at that time that these people were very acutely dying of the disease,” says Bincsik, who is now the director of Christiana Care’s HIV Community Program.

In 1989 Christiana established the Community Program for Clinical Research on AIDS with Dr. William J. Holloway, an expert in infectious diseases, as its principal investigator. The combination gave Delaware’s largest health system an edge both in research and treatment.

At first, treatment meant keeping patients comfortable as their diseases progressed. Then the Food and Drug Administration approved the anti-retroviral drug AZT in 1987. Yet the clinic’s partnership with groups like Delaware Lesbian and Gay Health Advocates (now AIDS Delaware) was integral to finding and treating patients. “We worked with them mainly because they had a buddy system and hospice, because the mortality rate in our first year was still 80 percent, even with AZT,” Holloway says.

Another clinician to arrive on the scene in the late 1980s was Dr. Stephen Eppes, now chief of the division of pediatric infectious diseases at Alfred I. duPont Hospital for Children in Wilmington. Having worked under Holloway, Eppes was especially interested in how the growing threat of HIV/AIDS related to young patients.

In 1987, “there had only been one child in Delaware who had HIV/AIDS, but that number grew pretty quickly thereafter,” Eppes says. “I think partly we weren’t looking for it. We knew it was there, but a lot of kids at risk didn’t know they were at risk, and their mothers and fathers didn’t know they were at risk.”

So who was? Though doctors and researchers discovered early on that anyone could contract HIV through several means, the early stigma of “a gay man’s disease” stuck. Many refused to believe they could get the virus, and continuing discrimination against the HIV positive made testing difficult. That perpetuated a reluctance among the HIV positive to reveal their status.

Houle and his colleagues at the HIV Consortium face such challenges as a matter of course. HIV long ago moved beyond gay men, but the demographic remains the most historically devastated by its spread. And with advances in treatment that allow for the infected to live relatively healthy, productive lives, many young gay men have become complacent and are engaging in behaviors that can spread infection, says Joe Scarborough, a community planning and policy assistant for the consortium.